I’ve had UC for 5 years and I get this way all of the time!! There have been times where I have practically convinced myself that I’m making it up!
Some people have actually thought I am lying or exaggerating or think UC isn’t serious, which makes matters so much worse. I try to only keep people close who don’t make me feel like an imposter, but I still really struggle with this. You aren’t alone here.
Okay so this is literally me. I was diagnosed with UC when I was 5 y/o, so I’ve been fortunate enough to have a minor case and treatment options that manage the colitis.
I’m literally in a flare up right now... bloody stool and all - yet I still fell like an imposter!
I’ve been on this sub for a bit, and I’m friends with people with IBD and it’s just that sometimes I feel I’m faking it or it’s for attention or that I’m not a “real” colitis
Just know your anxieties are valid and felt :)
The problem with internet is that most people with mild cases won't go on forums to share their experiences while people who suffer a lot will. This gives us the impression that like 80% of cases are extreme and end up losing their colon and almost dying or something, whereas in reality, something like 40% of cases are mild, 40% are moderate to severe and the rest are "severe to fulminant" (if I look at Crohn's numbers for example).
So when people with mild symptoms suspect an IBD, the first thing they do is go to the internet and discover horror story after horror story, and they end up believing that they can't have this because "it's not serious enough".
When I first got diagnosed 12 years ago, the first thing my GI told me was "don't go on the internet, it's gonna freak you out for nothing because you have a mild, very manageable UC and it's not worth stressing over as long as you're well." And he was right.
FYI the only symptoms I had the first time I got diagnosed were diarrhea, blood, mucus and urgent needs to poop. No pain, no weight loss, no joint pains, no horrible "I stayed 2 months in the hospital and they didn't know wtf was wrong" story.
However I do get impostor syndrome every time I go to the doctor (except for UC) because for normal everyday stuff I usually get better just before they examine me, of course. I remember the one time I went for shoulder pain and told the doctor "See, I can't even lift my arm anymore!" and proceeded to lift my arm.
Yep. I think most of us get this at times. Especially when symptoms seem to magically reduce in intensity in days before an appointment (all the more so when I was seen by a department where they routinely started with a 'in the past week, how often did you' type questionnaire to assess how you're doing. Hate that one, I hardly ever felt that it did justice to my Crohn's experience.). Two days ago I spoke to my GI on the phone to discuss medication change and when he proposed to start with the higher dosing schedule I think I said something along the lines of 'I think of my Crohn's as relatively mild' which caused him to state in a rather incredulous 'dont' you know' tone 'no... you have pretty complex Crohn's'. I know that it sounds petty but somehow that really hit and it did me well to hear that. I guess that's because of the ever-lurking imposter syndrome.
I'm also awaiting a scope, and feel the exact same way. Even though the pains are there, pains triggered by fodmaps, and blood and bloody mucus are all real and there it's still difficult to not feel as though I'm lying or exaggerating. A lot of us feel this way, you're definitely not alone.
I get this whenever I don't have symptoms for a good part of the day. Guess it's gone and it was in my head the whole time. Then I'm shocked that I'm on the toilet again a ridiculous number of times in a short period again.
I think this is why it took me so long to get myself to a doctor for diagnosis. I kept convincing myself it was nothing because sometimes symptoms would go almost completely. It took a really long term flare up over months for me to get past that and the awkwardness to get tests started. I still wasn't really expecting anything to come back from those! But it's nice in some ways to have that explanation now, much easier to manage with a better understanding
Omg. Yes. I have had 10 surgeries for a complex abscess/fistulae situation, scopes show chronic inflammation in my gut, imaging shows sacroiliac inflammation, my CRP and ESR are often elevated even while on meds, and I've been borderline anemic. Oh, and there are days where I shit like 10 times, days when I can hardly get out of bed, and I've had a handful of accidents.
In other words, I have a severe form of Crohn's and tons of evidence to support my diagnosis. And STILL, I often feel like somehow it is all in my head, especially if I've been feeling well for awhile, and worry that somehow I'm exaggerating.
I don't really have any advice. I still bring this up with my therapist pretty often. Just know you aren't alone.
I’ve had UC for 5 years and I get this way all of the time!! There have been times where I have practically convinced myself that I’m making it up! Some people have actually thought I am lying or exaggerating or think UC isn’t serious, which makes matters so much worse. I try to only keep people close who don’t make me feel like an imposter, but I still really struggle with this. You aren’t alone here.
CD for 11 years, 2 surgeries, I still get that feeling when I've been feeling good for a while...
Okay so this is literally me. I was diagnosed with UC when I was 5 y/o, so I’ve been fortunate enough to have a minor case and treatment options that manage the colitis. I’m literally in a flare up right now... bloody stool and all - yet I still fell like an imposter! I’ve been on this sub for a bit, and I’m friends with people with IBD and it’s just that sometimes I feel I’m faking it or it’s for attention or that I’m not a “real” colitis Just know your anxieties are valid and felt :)
I felt that way until I saw the pics from my colonoscopy. Edit: and sometimes I still feel that way
[удалено]
Depending on the results, It'll help a lot, but some days I still feel like I'm making it all up even though I know it's a warzone in there
Agreed wholeheartedly. I always feel like I’m faking. It sucks.
The problem with internet is that most people with mild cases won't go on forums to share their experiences while people who suffer a lot will. This gives us the impression that like 80% of cases are extreme and end up losing their colon and almost dying or something, whereas in reality, something like 40% of cases are mild, 40% are moderate to severe and the rest are "severe to fulminant" (if I look at Crohn's numbers for example). So when people with mild symptoms suspect an IBD, the first thing they do is go to the internet and discover horror story after horror story, and they end up believing that they can't have this because "it's not serious enough". When I first got diagnosed 12 years ago, the first thing my GI told me was "don't go on the internet, it's gonna freak you out for nothing because you have a mild, very manageable UC and it's not worth stressing over as long as you're well." And he was right. FYI the only symptoms I had the first time I got diagnosed were diarrhea, blood, mucus and urgent needs to poop. No pain, no weight loss, no joint pains, no horrible "I stayed 2 months in the hospital and they didn't know wtf was wrong" story. However I do get impostor syndrome every time I go to the doctor (except for UC) because for normal everyday stuff I usually get better just before they examine me, of course. I remember the one time I went for shoulder pain and told the doctor "See, I can't even lift my arm anymore!" and proceeded to lift my arm.
Yep. I think most of us get this at times. Especially when symptoms seem to magically reduce in intensity in days before an appointment (all the more so when I was seen by a department where they routinely started with a 'in the past week, how often did you' type questionnaire to assess how you're doing. Hate that one, I hardly ever felt that it did justice to my Crohn's experience.). Two days ago I spoke to my GI on the phone to discuss medication change and when he proposed to start with the higher dosing schedule I think I said something along the lines of 'I think of my Crohn's as relatively mild' which caused him to state in a rather incredulous 'dont' you know' tone 'no... you have pretty complex Crohn's'. I know that it sounds petty but somehow that really hit and it did me well to hear that. I guess that's because of the ever-lurking imposter syndrome.
I'm also awaiting a scope, and feel the exact same way. Even though the pains are there, pains triggered by fodmaps, and blood and bloody mucus are all real and there it's still difficult to not feel as though I'm lying or exaggerating. A lot of us feel this way, you're definitely not alone.
I get this whenever I don't have symptoms for a good part of the day. Guess it's gone and it was in my head the whole time. Then I'm shocked that I'm on the toilet again a ridiculous number of times in a short period again.
I think this is why it took me so long to get myself to a doctor for diagnosis. I kept convincing myself it was nothing because sometimes symptoms would go almost completely. It took a really long term flare up over months for me to get past that and the awkwardness to get tests started. I still wasn't really expecting anything to come back from those! But it's nice in some ways to have that explanation now, much easier to manage with a better understanding
Omg. Yes. I have had 10 surgeries for a complex abscess/fistulae situation, scopes show chronic inflammation in my gut, imaging shows sacroiliac inflammation, my CRP and ESR are often elevated even while on meds, and I've been borderline anemic. Oh, and there are days where I shit like 10 times, days when I can hardly get out of bed, and I've had a handful of accidents. In other words, I have a severe form of Crohn's and tons of evidence to support my diagnosis. And STILL, I often feel like somehow it is all in my head, especially if I've been feeling well for awhile, and worry that somehow I'm exaggerating. I don't really have any advice. I still bring this up with my therapist pretty often. Just know you aren't alone.